When diagnosed w
ith multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS. I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me. No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive. Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.
When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.”
So, where are health, wellness, and medical decisions made? Some do happen in the clinic, doctor’s office, or bedside between a person, their caregiver/partner and a clinician. Most happen independently away from the clinician – at church, the water cooler, dinner, in bed, driving – anywhere. Then a visit with a clinician occurs – “I want this, I want that.” I think there’s a period before a decision is made and a period after. And it is usually circular. Something happens: new pain, change in ability to care for ourselves, more unhappiness or stress. As we digest this new happening and give it a label or diagnosis. We may or may not act – a decision either way. Once a decision is made, with or without a clinician, we may have second thoughts or questions. What did we just decide? It’s the middle of the night after making a decision. We’re confused. Maybe it’s too hard to carry out the plan. Or we decided something and there is no plan.
I think a lot about Clinical Decision Support and health and wellness decision support. How do we make research (evidence) ready at the point choices are made by people, wherever and with whomever? It’s complicated.
One of the struggles that patients must add to their long list of struggles, is that of knowing how to assess the resources and advice that come to them. Many have no way to know if their own doctor is capable of providing the help those doctors may offer, nor do they have a way to judge the information from either clinical trials or the helpful lady at the health food store.
The only basis that all patients should use is that of understanding what their own values are. For some, it will be aggressive treatment, perhaps just to cling to life, or to live long enough to see a child born, or married, or graduated. The decision not to accept treatment is often clouded by memories of the anguished death of a relative twenty years prior, or due to the loss of trust in the medical providers after a lengthy misdiagnosis. We all benefit from clarity as to the information which is presented to patients, and from the great efforts needed to understand the wishes of the patient.
Thought-provoking, to be sure, Danny. It seems logical to me there are factors that explain those decisions and decision-making processes of yours and your mother’s and so many patients, though they may seem illogical as explained here. Those other factors should be identified and appreciated as powerful and “legitimate” to help us consider how (whether?) to make patient decision-making more evidence-based. Your proscription against compromising your optimism, for example – a hugely important factor for you, apparently. And why not? Jerome Groopman MD (The Anatomy of Hope, 2004) has written extensively about the therapeutic and often analgesic effects of hope an optimism on patients, and offered neuro-biological foundations for such effects. I think we might tend to either fail to see, or fail to “legitimize,” such “extra-therapeutic” factors in an arbitrary pre-sorting that then sets us up to be confounded when patients base decisions about their treatment on things other than pure efficacy research.
So wonderfully said, Danny. Thank you!